Life As I Know It

We brought E home from the hospital the first time on Mother’s Day.

On the surface, it seemed like a perfect wrap up to this chapter of our story: a miracle baby who came home on Mother’s Day. We took video of our triumphant exit and posted cute pictures. What all this didn’t emphasize were my decidedly mixed feelings towards Mother’s Day at all or the fact that we left the hospital trailing an oxygen tank, apnea monitor, and pulse oximeter. After the slow, nervous drive home, we placed E in her bassinet, switched her oxygen over to the machine that had been delivered to our house the day before, and then stared at her, almost unable to believe that she was somehow actually here in our living room.

It had taken years to reach this point. Many attempts at medicated cycles, two fresh IVFs, one FET, two losses, four ER visits, three hospital observations, seven and a half weeks on hospital bed rest, a c-section, and eight weeks in the NICU had all culminated in the tiny person in the bassinet.

All I could think was wow, I love her so much. Then: I am so terrified right now.

~*~

That first night, Arthur and I confronted the first obstacle: where to put E for the night. This might seem obvious with a normal newborn, and we had planned to simply put her in a cradle in our room so we would be close if she fussed or needed anything. The sheer amount of medical equipment complicated this plan considerably. The monitors beeped on and off, meaning if E slept in our room, neither of us was going to get any sleep at all. It took both of us to move E any further than the six foot radius her monitors accorded, which meant that we couldn’t just pick her up and take her into another room to turn on the lights to feed her. We had to watch E during feedings, as she had a tendency to take more than she could swallow at once and still had some issues coordinating her suck-swallow-breathe.

We kept her in the bassinet, taking turns sleeping on the couch, picking her up to hold, feed, and comfort.

~*~

That Wednesday, I took E to her first doctor’s appointment. I wrestled the diaper bag, E’s portable oxygen tank, two monitors, my purse, and E herself into the car. By the time we reached the pediatrician’s office, I was sweating and frustrated, having discovered that a couple hundred feet with that much equipment was a lot further than I’d realized.

The pediatrician barely glanced at E or me when she walked into the examining room. The visit was conducted mostly with her back half-turned to us, staring at the charting. “Are you depressed?” she asked in a monotone, checking off the next item on the paper in front of her.

“No,” I replied, unwilling to open up to this stranger who had shown no discernable interest in either of us. In my head, I snapped: look at me. I have a tiny baby who was born almost an entire trimester prematurely who is hooked to monitors and oxygen after months in the hospital. My milk is drying up no matter how much I pump and I’m terrified that something will happen to my fragile baby. What the h*ll do you think? OF COURSE I feel awful.

The pediatrician got up, listened to E’s heart, lungs, and bowels with her stethoscope and then walked out of the room. The nurse came in, gave E her two month vaccines, and then, because E is technically two months old, sent me home with a paper detailing the developmental milestones for a two month baby. E, as one might expect for a preemie, was meeting few of them. No one bothered to talk about adjusted ages or what developmental things E actually ought to be doing. The office told me they’d see me again in two months.

“Not before that?” I queried, surprised that they had no interest in checking up on E’s development sooner.

“That’s the normal schedule,” they told me.

~*~

I had expected some sleepiness and feeding difficulties with the vaccines E had received, so I hadn’t been too panicked when I had called the pediatrician’s office Wednesday afternoon needing to increase E’s oxygen. They told me to go ahead, but if she needed more I ought to go to the ER. Wednesday evening, E took a good bottle and seemed better overnight. I exhaled a breath I hadn’t realized I’d been holding.

By Thursday however, I watched as E’s oxygen saturations dipped on and off all morning. We struggled through her mid-morning bottle. The home-health nurse came to weigh E, who seemed more and more lethargic. I tried to feed E. E wouldn’t take the bottle. “I think you should take her to the ER,” the home-health nurse told me. I had been starting to consider the same thing myself, so when the home health nurse concurred, I knew it was time to go.

Due to her preemie status, E was readmitted back to NICU and a battery of blood tests and specimens were checked. Everyone expected that the vaccines had thrown her for a loop and that she might need a little extra observation to make sure she was feeding properly. As soon as she got back to NICU, E perked up and started feeding beautifully. Her 02 saturations went back to being normal on her usual amount of oxygen. We planned to take her home after the 48 hour observation was up.

Saturday morning as I started readying an outfit to take her home in, the neonatologist walked in and gently informed me that E wasn’t going home. One of the tests had popped up positive for bacteria. She had an infection that was, at that point, minor, but needed IV antibiotics for nine days. The neonatologist told me we were lucky we had caught it before it became serious.

~*~

We went back to our NICU routine with one significant deviation: E had been moved from a nice private room in the renovated area of the NICU into the “west”, the old NICU which was a big open room housing a number of babies. I resisted this move mightily. It took away the last tiny shred of normalcy we’d created for ourselves in the midst of the chaos, that privacy a single room afforded us to close out the beeps and whirrs and cries of the other babies to just be a family occasionally. I was grateful that she was considered the “healthiest baby” in a private room. I resented yet another thing most people take for granted – no matter how small – being taken away from us.

We held E while listening to other parents coo to their sick and tiny babies. I gave up on any semblance of modesty while trying to pump, watching as other mothers handed over what to me looked like enormous bags of milk while I continued to obtain an ounce or so per pump no matter what I did.  Consequently, E was started on a blend of half Neo.sure formula and half breast milk since I couldn’t get enough to exclusively supply her any longer.  The NICU staff got E off her oxygen midway through the week, though she still drifts down at times. I wound up needing an in-office D&E type procedure to extract a couple of suspected placental fragments. E’s second culture came back negative, showing that the antibiotics were working. I went back to work. An ultrasound on one body part for E showed the body part of concern to be normal but turned up an incidental finding that might or might not present a new issue. I called the pediatrician’s office and changed pediatricians.  I made an appointment to discuss my postpartum depression. It was a jumbled blur of disparate bits that somehow added up to life.

E is supposed to have her second homecoming today, although I’ve learned not to count on anything until the doctor signs the paperwork. We’ll see what her oxygen requirements are and what monitors the doctors recommend. We’ll begin again with a new routine, hoping this time, we might make it more permanent.

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16 thoughts on “Life As I Know It

  1. I’m sorry it’s been so hard. I’m glad you’re trying a new ped (you need a good one, for peace of mind, if nothing else). And if I may: I don’t know if you want to try anything more to increase your supply (hopefully doing the D&E has helped), but I found that a combo of domperidone and massage during pumping (a la these Stanford videos: http://newborns.stanford.edu/Breastfeeding/MaxProduction.html ) helped whip my PCOS-y crappy-supply breasts into eventually producing enough milk for my twins. It was a long 3 months before I got there, but it did happen eventually. (And to be clear, I’m not advising it–I think all the pumping made me less present and made a difficult time even harder, but I want you to be aware of all your options if you do want to keep going.)

    Hoping that E avoids further infection, and that you’re sailing into much smoother waters.

    • I really appreciate this – it’s nice to know options, and also to hear your experience. I hear you about all the pumping – it is SO exhausting.

      Thank you for sharing with me.

  2. Oh hon. There is so much here… I hope the second homecoming is today, but moreover, that you also have the space to self-nurture. It is so much to take in, to deal with. Be kind to yourself.

  3. Oh boy this sounds like quite a lot- and terrifying to boot! I’m glad that the drs were able to catch the infection early on and hope that E gets released today. Do you have any family that could help you guys?

  4. I have been reading your blog for a while now and felt compelled to comment on this post. I also have a preemie and spent time in the NICU and have PCOS…and all i can say is that you are stronger than you think and E is here and strong and so blessed to have you and hubby looking out for her with such love, concern and first-time parent nerves! It gets easier….all of it…slowly but surely it does. You probably won’t notice that it gets easier, but one day it will feel easier. The worry doesn’t go away, but it gets easier to manage. Be kind to yourself and my fingers are crossed E gets to come home again today!

    • Thank you so much – the preemie thing is definitely a challenge. I appreciate you sharing some of what you went through. E did make it home, which we were glad to have happen.

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